What is Cleft Lip & Palate

A Cleft Lip (CL) is a separation in the upper lip. A Cleft Palate (CP) is an opening in the roof of the mouth. Clefts result from incomplete development of the lip and / or palate in the early weeks of pregnancy. During this time the face is being formed – the top and the two sides develop at the same time and grow towards each other, finally fusing in the middle. The lip and primary palate develop at 4 to 6 weeks of gestation. While the secondary palate develops at approximately nine weeks.

 

In the instance of a cleft forming, the final closing does not fuse properly and an opening remains. The cause or causes for this failure to close are as yet not clearly understood, although research has been and continues to be undertaken. Genetics and environmental factors are both considered instrumental in causing clefts.

A sub mucous cleft palate is where, although the surface layers of the soft palate (mucous membrane) are complete. The underlying muscle is incomplete. A submucous cleft of the hard palate is where the bony element is incomplete. In its most minor form, only the uvula is cleft, but even this leads to an abnormality in the muscles in the palate and, if the speech is affected, a repair will be required. Normal speech production is the primary goal of any surgical repair of a sub mucous cleft. A sub mucous cleft palate can prove difficult to identify, the palate appearing normal in some children. Special tests may be necessary to properly identify it.

A cleft lip or cleft palate can be either unilateral (one side only) or bilateral (both sides). A cleft can be either complete or incomplete. A complete palatal cleft involves both the primary and secondary palate, while an incomplete cleft involves the secondary palate only. A child may be born with either a cleft lip or cleft palate or both. Combined cleft lip and palate represents approximately 50% of incidents, cleft palate only alone 30%, and cleft alone 20%.

 

Feeding of children with clefts

 

Children with cleft lip and/or palate have a malpositioned muscular group and pathological openings changing the vacuum in the mouth, which leads to different difficulties in feeding, breathing, hearing or speaking. There are untrue statements that children with such abnormalities do not have sucking reflex and cannot be breast-fed. Because of communication between the mouth and the nose, there is an unduly big fear of aspiration. All of this, combined with lack of knowledge about the essence of the problem leads to an incorrect approach in the first cares after birth, related to the nutrition of these children.
Babies with cleft lip and//or palate have more special requirements for feeding, but it does not mean that they can not be fed normally (breast-fed), with special feeding-bottle, droppers, syringes or spoon.
Every mother and every baby are unique, so it is not possible to give hard or fast rules to follow during the feeding. The choice of a suitable and safe method of nutrition should be specified with the help of a specially trained nurse.

Position of Baby:

The position of the baby during the feeding of children with facial abnormalities is very important. The baby should be half-standing, with well leaning back.When the baby has a cleft palate, the food often escapes through the nose. That can happen not only during feeding, but also when there’s a vomiting. This can cause not only inconvenience, but there is also risk for the baby’s health. Babies with cleft palate often suffer from ear infections caused by the existing communication between ear nose and mouth. That is why the position of the baby during feeding is very important.
babies with a cleft need to be burped more often because they take in more air while feeding. when the baby feels uncomfortable, stop and give him a burp by massaging the back.

Ways of Feeding children with Cleft

Breast feeding

Children with cleft lip only, can be successfully breast-fed. Sometimes, that can be hard to do, but we should not forget, that children without abnormalities may also have difficulties with breastfeeding. The suck has a series of advantages for the development of the facial and mouth muscles, which is quite important for the speech. Babies with cleft palate, who are breastfed, have less infections of the middle ear, than the others. The most important thing is the positive effect of the connection between the mother and the baby, which can not be substituted by bottles or nipples.

 

Feeding bottles

Often when the child has a cleft palate and the breast-feeding is not possible, soft feeding-bottle also can be used. The holes of the nipple should not be at the front or the top, they should be positioned laterally. There are special feeding-nipples developed, which can cover the cleft, and also soft bottles, that with occasional squeezes allow the milk flowing out into the mouth. The use of soft bottles is recommended only when the baby has GAG reflex, otherwise there is a risk of aspiration.
Special care should be taken while feeding the baby with bottle. it should be kept in mind that the nipple should not be placed in the cleft side as it can widen the gap.

 

Spoons

Babies with cleft can be fed with a spoon if they are unable to suck in their early days. Care shoud be taken while feeding with a spoon . The food should not be poured in the middle of the tongue. Using the spoon you should lightly press the tongue, gently turn the spoon and pour the food on the side, to the cheek, outside of the gum. Otherwise there is a risk of aspiration.

 

Dropper & Syringes

Often when the child has a cleft palate and the breast-feeding is not possible, dropper or syringe also can be used. The holes of the dropper or syringe should not be at the front or the top, they should be positioned laterally.

 

Types:

Unilateral Cleft lip

Bilateral Cleft lip

Mid line Cleft lip

 

A cleft lip can range from a little notch in the colored part of the lip to a complete separation of the upper lip which can extend up and into the nose. A cleft palate is a gap in the roof of the mouth. Cleft lip and palate can occur separately or together.

A cleft lip or cleft palate can be either unilateral (one side only) or bilateral (both sides). A cleft can be either complete or incomplete. A complete palatal cleft involves both the primary and secondary palate, while an incomplete cleft involves the secondary palate only. A child may be born with either a cleft lip or cleft palate or both. Combined cleft lip and palate represents approximately 50% of incidents, cleft palate only alone 30%, and cleft alone 20%.

 

Causes:

There is no single cause of cleft lip and/or palate. In most cases, a cleft is caused by lots of different factors (including genetics and the environment) coming together in a way that usually can’t be predicted or prevented. It is very unlikely that your baby’s cleft is because of something you did or didn’t do.
 Around one in 700 babies are born with a cleft around the world. That’s three every day. Annually in Pakistan, over 9000 newborns (or about one in 530 babies) are born with a cleft.
 Around 15% of clefts are caused by syndromes, where one or more symptoms occur altogether. If a syndrome is involved, the chances of passing on a cleft are all down to the heritability of the syndrome, which in some cases can be as high as 50%.
 An isolated cleft palate (where the lip is not affected) is believed to have a different cause to cleft lip and palate. So a family affected by cleft palate (but not cleft lip) may only be likely to pass on cleft palate. 
There are a huge number of factors that affect how likely someone is to have a cleft, including race, sex, and many different environmental factors that are almost impossible to predict without a careful look at an individuals genetic history and circumstances.

Factors

Environmental Factors

There have been a number of environmental factors linked to a higher chance of a baby developing a cleft. These include well known risks in pregnancy such as smoking and heavy alcohol consumption, as well as uncontrollable factors like the baby’s position in the womb. Certain medications have also been linked to a higher chance of cleft, such as anti seizure medications. 
These environmental factors can interact with genes in different ways, causing them to switch on or off as a baby develops in the womb. 
It is important to note that these are just factors and that the causes of cleft are usually much more complicated than what someone did or didn’t do while pregnant. Even the healthiest, well planned pregnancies can result in a cleft, and this is no one’s fault.

Genetic Factors

While some conditions can point to a single genetic factor as a cause, there have been a number of different genes identified as increasing the risk of having a child with a cleft. 
It may also be a matter of certain environmental factors switching genes on or off as a baby is developing in the womb. This is called ‘epigenetics’.

What to do if your child has cleft

You should visit facilities which provide complete guidance in this area. these facilities have teams of medical professionals, from surgeons to psychologists, who all specialize in treating cleft lip and/or palate. This should happen very soon after your baby is born.
Your baby will need surgery to repair the cleft and may need further help with feeding. If your baby has a cleft palate, they may need help later on with speech and hearing. Like everything else, this is taken care of by the cleft specialists in the Cleft Teams, who will monitor your child until they are 18-20 years old to ensure any issues are being dealt with.
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Treatment Plan

Cleft lip and palate treatment is carried out by the Cleft Teams. These are teams of cleft specialists, including plastic surgeons, nurses, psychologists, dentists and more, who are all dedicated to caring for people with cleft lip and/or palate.
There is a 20-year treatment plan in place, but every individual patient is different and most will not need all the services offered.

 

Surgery

Babies born with a cleft will need repair surgery to close the gap left by the tissue not coming together in the womb. Usually, a cleft lip will be repaired at 3-6 months, while a cleft palate will be repaired at 6-12 months.
One or more follow-up procedures may be needed once the lip and/or palate repairs have healed.
Additional surgery to help with speech may sometimes be necessary for those with a cleft palate.
Children with a cleft that involves their gum may need an Alveolar Bone Graft procedure when they are 7-12 years old to make sure their adult teeth come through properly.
As they get older, teenagers and adults with a cleft may choose to have more surgery once their face has stopped growing. These can include:

  • Rhinoplasty to change the shape and/or function of the nose
  • Lip revision surgery to change the shape of the lip after a cleft repair
  • Osteotomy (or ‘orthognathic’ surgery), which is where the jaws are realigned to change the appearance of the profile as well as how the teeth fit together
  • Restorative dental surgery, such as implants or veneers, to improve the appearance of missing or misshapen teeth
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    Speech

    Your soft palate (the bit towards the back of the throat) is part of the mechanism that blocks off your mouth from your nose while you talk. A cleft palate can make speech sound nasal or make certain sounds unclear, especially consonants like t, b and d.
    Around half of children with a cleft palate will need some form of Speech and Language Therapy to help them speak clearly. This can be also available to adults with speech issues.
    The goal is for children to have clear, intelligible (understandable) speech by the age of 5 so they can start school with confidence.

     

    Hearing

    Many children with a cleft palate will have issues with their hearing, more specifically ‘glue ear‘. This usually clears up by the time they are 6-8 years old, but will affect children in different ways as they grow up, and some children will have long-term issues.
    It can be treated using grommets or hearing aids.

     

    Dental & Orthodontic Care

    People born with a cleft can have a higher risk of tooth decay due to the placement or shape of some of their teeth. They may need extra attention from a dentist to keep their teeth and gums strong and healthy. Parents need to take extra care to maintain good dental health in children.
    If the cleft involves their gum, children will probably need some kind of orthodontic treatment which usually includes wearing braces or a retainer.

     

    Psychological Services

    Clinical Psychologists work in or with many Cleft Teams to support individuals and families affected by cleft lip and palate. They are available from diagnosis right through until adulthood. Through meeting with families and individuals they try to find out if more support is needed.
    Some of the reasons you might see a Clinical Psychologist from your Cleft Team include:
    • Talking to someone about worries you have about your or your child’s treatment
    • Help making decisions about treatment
    • Extra support during times of change, like starting school or moving into secondary school
    • You and/or your family have trouble talking about or coming to terms with a cleft lip and/or palate
    • Problems with bullying or teasing
    • Building confidence and self-esteem
    • Coping with things that can’t be changed or ‘fixed’ with surgery
    • Help to come up with coping strategies for things like staring or comments
    Clinical Psychologists with Cleft Teams are specialists who understand the specific issues which can face people affected by cleft lip and/or palate.

     

    Information

    Cleft Hospital Pakistan is a world class facility for complete treatment of Cleft Lip and Cleft Palate Patients.Cleft Hospital is a Non-Profit Organization Dedicated to Improve the Quality of Life of Infants, Children and Adults with Cleft Lip and Palate or Craniofacial Conditions.

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